The Moral Dilemma Of Theresa, The Newborn Without A Brain

FORT LAUDERDALE, Fla. - Asked by lawyers to issue "a Solomon-like decision" in the case of Theresa Ann Pearson - the baby born with no brain - a circuit court judge in Fort Lauderdale did just that.

Judge Estella Moriarty ruled yesterday that doctors can take as many transplant organs as possible from the terminally ill 6-day-old infant as long as they don't kill her in the process.

In practical terms, the decision clears the way for only one kidney to be taken, a University of Miami transplant expert said after the hearing. To remove the more valuable heart, lungs or liver would kill the baby and violate the judge's ruling.

But in a case fraught with cruel twists and mean ironies, Theresa is doomed to die and has no way of knowing she is even alive.

"She has no life," said her mother, Laura Campo, who attended the hearing as tears streamed down her face. "This doesn't make any sense."

With or without the donor surgery, Theresa most likely will die within a week, doctors say. Born Saturday morning at Broward General Medical Center with a defect known as anencephaly, she continued to cling to life today, in critical but stable condition, with no skull or scalp and nothing but a stub of brain to keep her heart and lungs working.

Visibly moved by Campo's tears, the soft-spoken Moriarty said she sympathized with the 30-year-old waitress's desire to help other babies live by giving up her daughter's organs. But Moriarty said state law was inflexible in its requirement that Theresa have no brain activity before she can be declared dead and all her organs taken.

"Death is a fact," Moriarty said, "not an opinion."

But by the time the law's definition of death is satisfied, Theresa's organs will be useless, testified Dr. Richard Beach, one of the child's doctors.

Theresa's father, Justin Pearson, said he was stunned by the decision.

Les Olson, director of organ procurement for the University of Miami, said a decision would be made today whether to proceed with the kidney operation if a recipient can be found.

If the operation proceeds and Theresa dies, doctors probably would not take any other organs - despite the fact that infant donor organs are the hardest to come by and 350 children nationwide need them, Olson said.

"That's a tough question," he said. "We probably wouldn't do it because people would accuse us of having a slippery knife. We can't afford that public perception. Donor programs rely on trust."

Beach, a neonatologist at Broward General, said the ruling also leaves doctors with an ethical and legal dilemma.

"The judge said we can't do any surgery that is threatening to the baby's life," he said. "Well, the problem with that is that any surgery is inherently life-threatening. The entire decision is a gray area. I don't know what we'll do when the time comes."

AN UNPRECEDENTED CASE

Walter Campbell Jr., a Fort Lauderdale lawyer who agreed to handle Theresa's case without charge, said that if doctors don't perform the surgery, he most likely will appeal Moriarty's decision and mount a full-scale court assault on the state law.

"Unfortunately, there's no case like this - there's no precedent - and the Legislature has defined death so narrowly that there's nowhere else for this family to turn but the courts," Campbell said. "It's difficult to appeal a case in which you've just won something. But if her kidney can't be used, we have nothing left to lose."

Anencephaly strikes about two out of 1,000 fetuses. The condition prevents the brain from forming beyond its stem. What remains is a small stub at the top of the spine that is thought to be a vestige of the primitive human brain.

The stub controls basic life functions such as heart beat and breathing, but also triggers some random muscle contractions that make anencephalic babies appear to have normal reactions.

That appearance posed an insurmountable barrier for Julie Koenig. She is the lawyer who was assigned by Moriarty to visit Theresa, gather facts about her case and report back to the judge.

"She flinches if you prick her skin," Koenig said. "She is alive within the definition of the law, and therefore has a right to an unassisted death."

But Beach disagreed: "That network is there, with all the nerves running from her toes and her fingers. But they don't lead anywhere. They go back to her brain and hit a dead end. It's a difficult concept to understand, but she doesn't have any capacity to translate the information she receives.

"She cannot tell the difference between pleasure and pain."

Eight of 10 babies with the condition are born dead, and only 400 to 500 a year survive longer than a few minutes, hours or days. Compounding Theresa's plight, she was born without a skull or scalp, leaving an opening that allows access to bacteria.

"I love kids as much as anybody," testified Campo, the mother of three healthy children. "If my kid can help another baby live, then that is what we want to do."

But Moriarty agreed with attorneys for the state and the hospital.

"We are concerned about possible criminal liability under this statute," said Lynn Futch Cooney, an attorney for the hospital.

Campbell, the family's attorney, countered that before the state law was revised in 1987, decisions about when a patient was brain dead were largely a private matter between doctors and families that hinged on whether there was damage to the brain that was incompatible with human life.

THE STANDARDS CHANGED

Olson, the organ-procurement director, testified that under that standard, Theresa could be pronounced dead even though her brain stem was still functioning. But under the new law, "this baby is still legally alive."

Cooney, the hospital attorney, pointed out that the Legislature considered an amendment to the law that would have created an exception for such infants, but it was rejected by a committee.

Finally, Campbell asked the judge if she would permit doctors to take one of Theresa's lungs and a kidney if she could survive.

"I don't want to go through the body organ by organ," Moriarty said. "I do think what I can do is to authorize the removal of any organ that the doctors decide is not life-threatening."

Olson said after the hearing that doctors would probably only be able to remove one kidney. But it would do little good unless they could find a recipient of almost exactly the same age and size as Theresa, which is unlikely.